A small sign of growing awareness

Watching ITV’s drama Lewis last night, I was surprised when discussion of dementia research cropped up.

This was part 1 of an episode called Intelligent Design. One of the fictional Oxford academics in the story was a scientist who was introduced as having contributed to dementia research. Inspector Lewis asked her about her work on Alzheimer’s, whereupon she widened the definition to include other dementias and started to explain the amyloid hypothesis. Of course, that didn’t last very long – the viewers were signed up for a police drama and didn’t want a long explanation of the chemistry of the brain and different theories about the causes of dementia. It was, however, a strangely heartening moment, another small sign that discussion of dementia is becoming mainstream. It doesn’t matter if most of us don’t know what the amyloid hypothesis is, the important thing is that we can talk about dementia.

By coincidence, the programme’s star, Kevin Whately, is an ambassador of the Alzheimer’s Society.

Losers are also winners

The news that the price of a Lotto ticket is to increase to £2 is followed by the news that the percentage going to good causes will be lower. It drops from 33% to 31%.

We have to assume that the main motive for most people buying a ticket is the hope that they will win zillions and live on a yacht. However, a lot of people will be miffed to think that less of their losings will go to help a charity or community project somewhere.

With this in mind, I thought I’d tell you about the BRACE lottery. We have a 500 Club, regulated by the licensing authority local to our head office, which happens to be South Gloucestershire Council. It costs just £1 a week to take part and the winner gets 25% of the takings.

I think this compares rather well with Lotto and other commercial lotteries. It costs less to enter and 75% of income ends up in funds for dementia research. The other 25% goes to the winner, who is someone who has chosen to support our charity in this way.

We currently have about 240 participants, so we are roughly half way to the maximum allowed within the rules. The winner in any week therefore receives a cheque for about £60. This is a tad lower than the telephone number sums you might dream about when you buy a Lotto ticket, but it won’t ruin your life if you win. You also have a much higher chance of winning than the millions to one odds that face Lotto customers.

Of course, if you join the 500 Club, you marginally increase the odds against any one person winning and you add 25 pence to the jackpot each week.

Above all, whatever the outcome, you will know that your main motive is to help beat dementia and that 75 pence of your pound has gone straight into that fight. Even when you don’t win, you win.

Interested? All you need do is visit our 500 Club page, download the form, complete it and send it to us.

Who won the lottery? Who tipped the fight against dementia?

It might be you.

Old age, but not as we know it

It was good to read about the dementia debate in Parliament last week, called by the former Health Minister Paul Burstow MP.

Although there will be differences of emphasis and sometimes policy between the parties, I take heart from the evidence that all three main parties recognise that “doing something about dementia” is a priority. Dementia is past being the darkness that dare not speak its name, and past being the clichéd elephant in the room. It is now being talked about in many forums, including Parliament, and there are people like Mr Burstow who are prepared to make others return to the subject time and again.

The debate was closely followed by the Government’s announcement this week of reforms to the state pension. Their close proximity was coincidental, but they have a common cause. Because we are generally living longer, old age needs to be reinterpreted and planned in a new way.

When 65 was first set as the retirement date for men (60 for women), the numbers of people living deep into retirement would have been relatively low. Changes to pensions policy have been inevitable for some time because we now expect to live to 80 or more, and that is expected to increase.

This is the same increase in life expectancy that means that there are far more people in the age groups that are at high risk of dementia. There are therefore far more people with dementia.

Just as we can’t expect pensions provision from another era to work in the 21^st century, neither can we expect the NHS, social services and everyone else to cope with the rising number of dementia patients on the basis of out of date thinking and statistics. For example, with more dementia sufferers overall, there are inevitably greater numbers of them in our hospitals, admitted for reasons other than dementia.

While dementia has always caused suffering to individual patients and those close to them, rising numbers make it a problem that society is struggling to manage. It seems callous to reduce suffering to numbers, but these numbers matter. One new case every seven seconds is a lot of people, as is 36 million current cases worldwide. £23 billion cost to the UK every year is a huge blow to our public services.

We should not hesitate to provide the best possible care for everyone with dementia, treating them as every bit as important as other patients and dependent people. However, part of the purpose of dementia research is to reduce the numbers, with and without currency signs, so that fewer individuals suffer and our public services can cope more easily.

This is a changing world and woe betide us if we don’t prepare for it, even at this late stage.

Alzheimer's is like England

People often ask us “what’s the difference between Alzheimer’s and dementia?” I’ve started telling them that Alzheimer’s is rather like England.

England isn’t the United Kingdom. It happens to be a little more than half the UK’s land area and has easily the majority of the population. However, it isn’t the UK and it isn’t even the whole of the island of Great Britain, just most of both. It is strange then that England and the UK are sometimes referred to as if they were synonymous, to the justifiable irritation of the Welsh, Scots and Northern Irish.

The same thing has happened to Alzheimer’s disease (AD for short) and dementia. AD probably accounts for about 60% of cases of dementia, though the picture is blurred a little by mixed dementia and difficulty in achieving an exact diagnosis. It is most cases, but not all cases, of dementia. At some point, don’t ask me when, people started to refer to dementia as Alzheimer’s, as if there were no other kind. This can sometimes be annoying or even distressing to people whose lives have been torn apart by vascular dementia, Lewy body dementia or dementia with another cause.

A charity like BRACE can’t turn an international tide, so we have gone with the flow. When BRACE was named in 1987, the acronym took in the letter A for “Alzheimer’s”, not D for “dementia”. When we revised our strapline in 2009, we made a conscious decision to keep the reference to Alzheimer’s because the term seems to be more widely understood than dementia. The two big national dementia charities in the UK both have the word “Alzheimer’s” in their name and the same pattern seems to be followed in many other parts of the world.

No charity involved in this work can risk not being noticed by using a different language. If we are going to be effective in increasing understanding of dementia, however, we need to make people aware that the causes of dementia are legion and that not every type manifests the same symptoms.

As I am always at pains to point out, BRACE is constituted to fund research into any kind of dementia and currently supports research into four types. These four types or causes of dementia probably account for about 90% of all dementia.

New Year and resolution

Another New Year and millions of people are making resolutions. Of course, the start of a new year is simply a date change, a reminder that the earth has completed another orbit of the sun. In our case, it also happens to be the end of our accounting period, so we draw a line under our figures, compare them with previous solar orbits and ask ourselves whether we are improving.

As 2012 was in many ways a very successful year, it would be tempting to rest on our laurels (not that resting on laurels sounds especially comfortable). Given the scale of the task ahead of us, though, what a mistake that would be.

Dementia is a huge and growing problem – I can use the phrase “global crisis” without being alarmist. Despite the very welcome extra funds scraped from a diminished public purse by HM Government, research in the UK and abroad depends heavily on charities. To be blunt, there aren’t many charities – in the UK, at least – which exist for this purpose. We’re not the biggest by any means, but we play a vital role that bigger research charities and, for that matter, governments cannot.

All of which is not reiterated to make you glum, but to make a point about the sort of resolution we need at the start of another year. Not a short term promise to cut calories or behave better but the “condition or quality of being resolute; firmness or determination”. When 2014 arrives, we shall look back at 2013 and say we need to do more again… and again and again.

Beating dementia isn’t going to be a quick overnight victory as someone somewhere rushes into the street from the bath (or, more probably, lab) screaming “eureka”. Neither is it going to be done on the cheap or entirely because of one charity grant or one government announcement. Being resolved to carry on the fight, year on year, is what matters. Those who come after us will thank us, just as we thank those who started and kept going when there was little obvious cause for hope, and who advanced medical knowledge to where we are today.

So, BRACE’s New Year resolution? Yes, we have lots of it!

A good year

2012 might not be over yet but I can already say with certainty that it has been a good year for BRACE.

With the charity sector shivering in the cold winds that are blowing through the world’s economy, most charities are pleased not to be among those that have to report falling income and cutbacks. BRACE has managed an increase in both donations and income from fundraising activities.

This has come at a time when the demand for research funding seems to be increasing. It’s encouraging that the field of dementia research is more crowded than it once was and that new proposals are coming forward all the time. However, this is only a good thing if new ideas can be matched with new funding. During 2012, our Trustees have committed almost £800,000 more to research initiatives. There is no doubt that we shall be asked for a lot more in 2013 and beyond as the search for dementia treatment becomes ever more urgent.

This is not easily achieved in an economic downturn, and we are working harder, longer and more imaginatively to carve out these successes. We are indebted, as always, to the various volunteers and sponsored runners or riders who do so much, but we are increasingly helped by businesses and community groups who raise funds for us.



Fundraising for BRACE. Fishponds GPs raised £'00s and gave us our favourite photo of 2012

The single best way you could help us in 2013 or beyond would be to ask your employer, school, faith group, club etc. to think about BRACE as its next adopted charity.

Oh, and while I think of it, we’re on the ballot for a donation from a company in London. If you read this before New Year, there should still be time to vote for us. All you need to do is go to the web page and click next to our name. Thank you!

By any other name

I am a follower of Beth Britton’s excellent blog, D4Dementia and was struck by the issues she raised in her post of 21 November.

This concerned moves by the American Psychiatric Association to rename dementia “major or minor neurocognitive disorder”, or NCD for short. I won’t repeat great chunks of Beth’s eloquent article, which you can still read in full by clicking on the link above (but please come back here when you’ve finished!).

Things are sometimes renamed as a way of sanitising their reputation, such as when Windscale became Sellafield. No one was fooled; it was still a nuclear power plant with the dubious distinction of the worst nuclear accident on record until Three Mile Island happened.

However, no one is trying to “sell” dementia or convince us that it’s not dangerous. The motive appears to be sensitivity about stigmatising sufferers. If so, it’s a worthy motive, but one that might be unhelpful outside specialist academic and clinical circles.

It’s worth reminding ourselves what “stigma” actually means. It comes from a Greek word to do with marking or branding, and stigmatising usually means marking someone for disgrace or disapproval. That is clearly not something we want to happen to people with dementia, though we recognise that it always has.

In Catholic spirituality, however, having the stigmata – the wounds of the crucified Jesus – is a mark of honour and often sainthood.

In other words, it is up to us how we look at someone who is marked. If someone carries the mark of dementia, what emotions and actions does it prompt in us? Fear, denial and a tendency to shun and put out of sight? Or, as Beth says, could it prompt “care, compassion, kindness, understanding, fairness and opportunity”?

Calling dementia NCD won’t take away its cruelty. The word “dementia”, which comes from a Latin root and has to do with losing one’s mind, reflects the pain of the experience of dementia. Changing to the rather more aloof NCD won’t make the experience any less cruel for either the patient or those close to them.

There’s another issue. Organisations like the one I manage have been trying to raise awareness of dementia for decades. I worry that a change of name will mean a lot of work and missed opportunity as we try to make people aware that NCD is the same as dementia and that Alzheimer’s is still the main cause.

Which brings me to my final point. There has been an entirely unplanned drift towards treating dementia and Alzheimer’s as synonymous. They are not, of course. Dementia describes a group of symptoms that can be caused by one or more of a range of diseases, more often than not Alzheimer’s disease. This common usage has been picked up by many organisations, including the biggest dementia charities in the UK and, of course, BRACE. This is because we have to communicate with people by using the words that they use.

You will see BRACE collectors wearing sashes with the word “Alzheimer’s” in large red letters. People give to our collections because they identify with this. Some, who have had experience of a different cause of dementia in someone close to them will come over and ask “do you do research into vascular dementia?” (or another form), to which we can reply “yes”. Our strapline says “funding research into Alzheimer’s”, but we also fund current research into vascular dementia, fronto-temporal dementia and dementia with Lewy bodies. This could be extended into other causes of dementia.

Don’t expect to see our collectors wearing sashes with “NCD” emblazoned on them. We don’t plan to baffle the public.